Whether you have first-hand experience with lupus and lupus overlap diseases or you are driven to fight for the people who cope with lupus, you are in a unique position to be heard – your voice is powerful!
Are you an advocate or are you an ally? If you or someone you know has systemic lupus erythematosus (SLE), you have the amazing opportunity to create positive change. You are a lupus advocate if you personally experience lupus as a chronic disease. You know what it’s like to wake up and deal with all of the symptoms that this disease entails. You’ve learned to cope with the effects of lupus, and you would like to help others do so as well. You want them to benefit of your life experience as well as insure that you and they are receiving the best care possible.
You are a lupus ally if you do not have lupus, but are motivated to speak for those who do. Perhaps, there are people in your life you care about deeply who deal every day with the fatigue, brain fog, and the health anxieties having lupus can bring. You are an ally if you have the desire and ability to rally for people living with lupus, and you want them to receive the latest and most successful treatments needed to experience low disease activity and a better quality of life.
Using Your Voice in Fighting Lupus is Taking Action
There are several ways you can be an advocate or ally for individuals living with lupus. From educating family and friends to visiting Capitol Hill and meeting with legislators, there are options for everyone.
- Understanding how your health insurance and billing works, communicating effectively with your healthcare practitioners, and maintaining your own healthcare records are some of the ways you as an individual with lupus can make sure you are getting the treatment – both physically and emotionally – you need.
- Advocacy – Educating yourself and those around you – from friends and family to the broader community about lupus – is a great way to spread the word. At times you may find yourself educating members of the medical community. This is important and necessary work. In your daily life, you may come across a lot of people – from friends to your hairstylist/barber – who may not know about lupus. Help them understand…so they can spread awareness!
- Getting involved with an active lupus community can be a springboard to advocacy. Join a support group or participate in fundraising events. Join in social media efforts such as Instagram and Facebook pages (check out the Lupus Fighters of America Facebook page). This is the easiest way to stay abreast of the latest information and to join communities of like-minded individuals who choose to make a difference. Participating with an organization like Lupus Fighters of America can also connect you to the national and international efforts in research and policy-making.
- Broadcast yourself! Even posting information on your own social media platforms can start the conversation. When I’ve done this, I heard from several people who have been touched by lupus and chronic illness – people that I had no idea were living with lupus!
- Participating in Patient-Centered Research can also be a form of advocacy. As someone living with lupus, you can help inform medical research by being willing a participant in clinical trials or by joining advisory panels.
So, there are many ways to be an advocate or ally. Whether you do so with your support system, locally with a nonprofit, virtually on social media or nationally in Washington D.C., you have the ability to tell your story and become an agent of change. There is something for everyone and together we can all make a difference!